People with Disabilities & End of life Policies
Vulnerable Populations and End of Life Care New Emerging Team (VP Net)
Policy Research Theme (email: )
Decision making at end of life
Decisions at end of life are made by people in that stage, their care providers, doctors and the courts. Through advanced directives people can assert control over the treatment they receive in their last days. Negative stereotypes about the value of a life where disability is present can influence treatment decisions. People with disabilities and their families sometimes have their end of life decisions challenged and sometimes over-ridden. If a doctor believes that a treatment will not benefit a patient, the patient cannot oblige a doctor to provide it. In some end of life situations, a patient and a doctor will decide that if a crisis, such as heart failure, occurs life saving interventions will not be done. A Do Not Resuscitate (DNR) Order is put on the patient’s chart. In Manitoba, as a result of a court decision doctors have the sole authority to place a DNR order on a patient’s chart.
Hot topics
People with disabilities identified:
Loss of decision-making power—Participants shared instances at end of life where the decision-making of people with disabilities, or their families, was over-ruled. Legal action was reported as a way to restore decision-making power.
Fear—People are afraid of having their decisions overturned at end of life.
Bureaucratic approaches—Participants were critical of the complexity of end of life decision-making and service providers who treat end of life decision-making like just more paper work, failing to provide emotional support.
Need for support—Participants wanted more support in addressing end of life planning related to decision-making and other matters. Some participants shared anecdotes, demonstrating how family and friends can restore decision-making to an individual. Some participants noted knowledge gaps regarding end of life.
Choice—Participants wanted to have their choices at end of life respected.
VP Net Policy Theme- Spring 2007 Community Forums
Its research focuses on people who experience vulnerability as a result of disability and how this is evident in the policy framework of palliative and end of life care as well as the ways in which disability policies address end of life care needs of people with disabilities. We collected data in 2005 in Edmonton, Winnipeg, Ottawa, St. John’s, where we are returning to share a summary of findings and their advocacy implications.
Futility of treatment
A Problem
If a doctor decides a treatment will not work—it is futile—the patient cannot compel the doctor to do the treatment.
The Environment
Negative stereotypes about disability can impact on doctors’ decision-making about futility of treatment.
Advocacy Options
►Disability groups may want to influence health authorities to develop protocols that would assist doctors in their decision-making when making a determination of futility of treatment when a patient has a disability.
►Advocacy organizations may want to participate in training sessions of medical personnel and examine futility of treatment through a disability lens.
Do Not Resuscitate (DNR) orders
A Problem
In Manitoba, doctors can place a DNR order against the wishes of a patient and his/her family.
The Environment
In the 1998 Manitoba Court of Appeal decision in the case of Child and Family Services of Central Manitoba v. Raymond Lavallee and Susan Lorraine Hay doctors were given the sole authority to decide when a DNR would be placed on a patient’s chart.
Advocacy Options
►Campaign to make Manitoba’s DNR policy conform with practices in other provinces, where DNR orders are made with a view to a patient’s wishes.
Knowledge sharing
A Problem
To make good decisions, an individual needs to be aware of the options that exist.
The Environment
Due to various barriers, such as a lack of plain language, isolation, lack of alternate media, people with disabilities do not always have access to all the information that assists with decision-making.
Advocacy Option
►Provide information sessions to people with disabilities about decision-making at end of life.
The Manitoba League of Persons with Disabilities published a guide to help with end of life decision-making called Making A Will to Live. Visit: www.mlpd.mb.ca/publications.html.
Information about the Euthanasia Prevention Coalition can be found at: www.epcc.ca.